If every cloud has a silver lining, the silver lining of the COVID-19 pandemic for me was its role in helping me receive a diagnosis after nine years of chase. I owe the culmination of my hellish struggle to get a diagnosis for my long-lasting symptoms to the COVID-19 pandemic. When I finally received my diagnosis, thanks to noticing its similarities to long COVID, I remember thinking, “It takes a pandemic to get a diagnosis for a woman in a sexist society.” As I witnessed the struggle of many people around me trying to get answers and care for their excruciating lingering symptoms after the initial infection, I could not help thinking that we could have been in a much more competent place to diagnose and treat long COVID patients, had we taken women’s symptoms seriously and invested in researching them. 

Many long COVID patients present with some poorly understood chronic illnesses that disproportionately affect women, such as various autoimmune conditions, Postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome  /Myalgic Encephalomyelitis(CFS), mast cell activation syndrome, and dysautonomia. Hence, it is no surprise that long COVID disproportionately affects women. It is also no surprise that medical professionals did not believe in and dismissed many long COVID patients during the early periods of the pandemic. Many of these conditions are marginalized in medical research in myriads of ways. Medical professionals are not well-trained to detect and treat them; there is little research devoted to understanding them and finding treatments for them; and many medical professionals dismiss the testimony of these patients and confuse their symptoms with psychogenic conditions. 

Dismissal of their testimony further marginalizes these patients in the medical discourse, perpetuating their exclusion from hermeneutical discussions regarding their own conditions. Due to the knowledge lacuna the treatments usually target symptom management rather than a cure or finding root causes. These chronic health challenges are often comorbid, despite being erroneously perceived as rare, mysterious, or even dismissed as psychosomatic. Manifesting as systemic disorders impacting multiple bodily systems, they present seemingly disconnected and ostensibly trivial symptoms that significantly impair individuals. These symptoms encompass gastrointestinal issues such as malabsorption, nausea, and diarrhea, alongside manifestations like headaches, vertigo, profound fatigue, persistent pain, exercise intolerance, skin issues, cognitive impairments, as well as joint and muscle complications, among others.

However, the increasing number of patients with COVID-19 presenting with these symptoms and chronic conditions exposed the marginalization of these poorly understood and diagnosed chronic illnesses in the scientific and medical communities, and helped bring more attention to them.

When the first wave of COVID-19 patients kept coming back to hospitals with lingering symptoms, medical practitioners did not take them seriously. Extreme fatigue and exercise intolerance were two of the most common symptoms reported by long COVID patients. These symptoms are closely associated with the condition known as CFS. CFS is one of several medically contested conditions, as it does not lend itself to the well-defined and objectively measurable etiology of most of the illnesses our healthcare system usually deals with. Just like long COVID, the majority of CFS patients are women, and CFS patients have a long history of being dismissed and ignored by medical communities. 

As the number of people infected with COVID-19 increased during the pandemic, so did the number of patients with after-Covid symptoms. These patients found each other on social media, formed alliances, and advocated fiercely to receive medical attention and care. They coined the term long COVID (they also referred to themselves as long-haulers), which is probably the first illness to be defined and named by patients themselves. Their advocacy resulted in the recognition of the illness by medical authorities and policymakers in a matter of a few months. Now there are long COVID clinics in the US that specialize in the care of these patients, and there is significant funding reserved for the research of the complex phenomenon of long COVID. However, there are still many medical practitioners who are not familiar with long COVID and other complex multisystem conditions such as POTS and CFS. 

This essay is an exploration of the sexist dynamics in medicine and science for the purpose of making sense of this complex world of poorly understood chronic illnesses. Sexism, as an institution, permeates many of the social structures in a society. From our salaries in the workplace, to the pleasures in our bedrooms, there is no facet of society that is not impacted by sexist beliefs, norms, and practices. Silencing women and dismissing their ailments as stress or anxiety is another symptom of sexism in our society that does not get the attention it deserves, proportional to the harm it causes. Women are statistically more likely to get delayed diagnoses, and being a man is associated with an early diagnosis. This phenomenon is called the diagnostic gap. Now, let’s better understand this problem of diagnostic gap.

The Problem: Diagnostic Gap

Women have a hard time getting a diagnosis for conditions that majorly affect them. However, diagnostic delays for women are not exclusive to these primarily “female” conditions, such as CFS and POTS. Being a woman means being statistically more likely to wait for a diagnosis. There are a plethora of studies showing that female gender is associated with prolonged diagnostic delay, treatment, while male gender is associated with a much lower risk (1). Many of these studies also emphasize the consequences of such a delay for the daily lived experiences of women on an aggregate level, including psychological, economic, social, and spiritual dimensions. 

Despite the heightened attention given to these conditions due to their overlap with long COVID, there is no substantial discourse within feminist philosophy. This lacuna merits careful consideration, particularly from feminist philosophers, given its pervasive impact on the daily lives of many women. Additionally, it underscores the intricate workings of the patriarchal system within contemporary medical practices, signifying a pressing area for critical inquiry.

Healthcare professionals often hasten to attribute their female patients' symptoms to "stress" or "psychological issues" in the absence of conclusive test results. During my prolonged nine-year pursuit of a POTS diagnosis, some physicians blatantly dismissed my condition as purely psychological, claiming that "it was all in my head," while others subtly conveyed skepticism through their expressions. Healthcare providers encounter greater challenges in accurately diagnosing these illnesses, particularly in their initial phases, owing to the inclination to dismiss women's symptoms as psychological in nature. Initially perceiving my experience as an outlier, akin to the stories of numerous women grappling with delayed diagnoses, I later discovered extensive resources chronicling similar narratives, which dispelled my belief that POTS was a rare condition. Engrossed in these resources, I sought solace for my isolation, desperation, and, above all, a fervent yearning for validation. A prevailing theme across these narratives was the plea for recognition and comprehension after enduring years or even decades of marginalization and silencing within the healthcare system. Remarkably, many of these women encountered psychosomatic diagnoses along their arduous journeys.

These conditions are mostly characterized by flare-ups, meaning that one can feel relatively well for a period of time with their symptoms less pronounced, and then have periods where the symptoms significantly worsen. The waxing and waning pattern of the symptoms is frequently cited as corroborative evidence in favor of a psychosomatic diagnosis. Many of the symptoms associated with these conditions may not be observable from the outside. Prevailing social and cultural norms regarding illness and disability demand manifestations that are readily perceivable by and intelligible to healthy and able-bodied observers. In some cases, certain debilitating symptoms or conditions might not align with established medical literature or communal interpretative frameworks. Consequently, patients grappling with these experiences might lack the necessary conceptual framework and vocabulary to articulate or grasp their symptoms fully.

Furthermore, even when some of these symptoms are observable, our collective ignorance of the wide range of disabilities and how they may present usually hampers our ability to recognize them. This collective shortfall in discerning the breadth of disabilities often leads medical practitioners to attribute these conditions to psychological origins and dismiss them. Despite enduring pervasive discomfort and an intuitive awareness of an underlying issue, the patient continues to be exposed to silencing. They find themselves in a desperate struggle to convey the gravity of their condition to those around them.

Oppression and Epistemic Injustice

Oppression

Systemic and structural oppression consists of a set of habits, norms, assumptions, beliefs, and prejudices that underlie and shape our daily interactions as human beings and societies. Every institution in a society partakes in the maintenance and reproduction of oppressive systems through reinforcing practices that advantage some groups while disadvantaging others. In Justice and the Politics of Difference, Iris Marion Young argues that the enormous injustices some groups suffer are "a consequence of often unconscious assumptions and reactions of well-meaning people in ordinary interactions, media and cultural stereotypes, and structural features of bureaucratic hierarchies and market mechanisms—in short, the normal processes of everyday life” (2). When a medical practitioner dismisses a woman’s symptoms, does not believe in her experience of illness, and misdiagnoses her as psychosomatic, when in fact she has CFS and/or POTS and/or some autoimmune condition, the actions of the medical practitioner are most often a result of unconscious assumptions, cultural stereotypes, and a lack of training in those conditions that primarily affect women. 

According to this account of oppression, the oppressed group does not necessarily have another person or group actively and intentionally oppressing them, yet the established socio-economic, political, and cultural mechanisms of society work in tandem in such a way that one group is continuously disadvantaged while the other group enjoys privileges. In the case of medical sexism, the medical practitioner does not necessarily mean to oppress their patient by denying her medical care. However, a variety of factors, such as the way we perceive women in a sexist society, the way we create medical knowledge, and the way we practice scientific research, bring about the oppressive environment in which women have to wait much longer to receive their diagnoses. Since there is no tangible oppressing group or laws supporting this oppression, these types of oppressive structures are harder to notice, point out, and change. For this situation to change, we would need a complete overhaul of our sexist norms, beliefs, and practices. Furthermore, oppressive structures are usually extremely durable and have admirable malleability and flexibility in adapting themselves to their changing environments. When faced with resistance, they tend to find novel ways to update and retrofit themselves to the exigencies of contemporary society. That is why we need more scholarship discussing these forms of oppression and advocacy pointing out the harms they cause. 

Of crucial importance here is the interlocking configuration of different systems of oppression and the severity of harms this configuration causes for individuals who are regularly exposed to multiple systems of oppressions. As much as my experience of being dismissed by the medical establishment made me think of the entrenched structures of sexist oppression; it also brought questions about the extra challenges women from lower socio-economic classes, marginalized racial groups, and with disabilities may be going through in their journeys to receive proper diagnoses and care.

Racial disparities in health are well documented despite lack of corrective measures to bridge the gap. African American women, for example, are three to four times more likely to experience pregnancy related mortality compared to white women.. They are also sixty percent more likely to give preterm birth compared to white women in the U.S and they have the highest infant mortality rates across all other racial and ethnic groups in the U.S. A more sophisticated analysis of the pregnancy related poor health outcomes for African American women is needed because these poor health outcomes are directly linked to their experience of racism on an ongoing basis. As Shannon Sullivan explains, racist oppression has detrimental physiological effects on African Americans as it causes weathering—“the gradual wearing down of the body’s systems by stressors that accumulate over time” (3). 

Let’s provide an example from popular culture. Some of you will remember Serena William’s health complications after giving birth to her daughter, Olympia. Suspecting a pulmonary embolism, which is a condition she has suffered before, Williams asked a nurse to be put on a heparin drip. She had to insist again and again to get the care she needed after the nurse replied: “I think all this medicine is making you talk crazy.” William’s case is poignant as it shows the pervasiveness of racism in medicine even for the otherwise privileged African American patients. Williams is a world renown athlete with a twenty-three Grand Slam singles titles. However, even the privileges of fame and wealth seems to fall short of counteracting the entrenched racism and sexism in the medical system. 

Serena, Brandi Hofer; Image Credit: Saatchi.

Epistemic Injustice

While women are exposed to sexist oppression in medical environments in a variety of ways, the diagnostic gap is indicative of a specific form of oppression or injustice that is primarily and distinctively epistemic in kind. In Epistemic Injustice, Miranda Fricker identifies social power as the main catalyst shaping the conditions for the emergence of epistemic injustice and describes epistemic injustice as a “wrong done to someone specifically in their capacity as a knower” (4). She discusses two forms of epistemic injustice. The first is testimonial injustice, and the second is hermeneutical injustice. Now let’s look at what testimonial and hermeneutical injustices are and how they are created, maintained, and fostered in medical contexts. 

A knower's intersectional identity categories and the power these identities afford her influence the creation and dissemination of knowledge in a society in various ways. Mainly, a member of a society may be afforded lower epistemic credibility because of their marginalized identity, while another member with a more respected and valued identity may be afforded much higher epistemic credibility. Testimonial injustice refers to the form of injustice where the speaker’s testimony is rendered less credible due to their marginalized identity. For example, when a woman’s testimony of her own lived experience with respect to her symptoms in a medical setting is not taken as credible, she experiences testimonial injustice. Fricker distinguishes a primary from a secondary type of harm caused by testimonial injustice. The primary harm consists of the epistemic harm of being excluded from the processes of knowledge production due to one’s identity. Since the capacity to give knowledge to others is one of the components of the capacity for reason, undermining this capacity carries the implication that the speaker is “less than fully human” (5). 

When these women with “mystery” chronic illnesses are repeatedly discredited in their encounters with medical professionals, “they are degraded qua knower, and they are symbolically degraded qua human” (6). Given the prejudices surrounding women in medicine (and any given institution), it would not be an exaggeration to argue that the epistemic credibility of the female subject is constantly in question. 

The secondary harm in testimonial injustice refers to the negative implications that may follow from the primary injustice. The secondary harms are mostly in the form of practical harms, but they could also manifest as further testimonial harms. To explain this practical type of harm, Fricker gives the example of a woman whose ideas were not taken up until they were spoken by a male member of the team (7). In that instance, the testimonial injustice she is exposed to has the practical implication of holding back her career. In the case of medical encounters, the practical implications of testimonial injustice may be more severe. Unfortunately, as my personal experience and the memoirs of plenty of women who were at the receiving end of testimonial injustice in medical settings attest, the practical harms induced by an initial testimonial injustice abound. Due to the dismissal of symptoms and lack of a diagnosis, one may not be eligible for the necessary accommodations to continue their work and may end up losing their job. Finally, recalling Serena William’s experience of pulmonary embolism after giving birth and not being taken seriously about her complaints, which nearly caused her death, might explain the drastic scope of such practical harms.

Secondary testimonial harm, on the other hand, is a type of harm that follows from the first experience of testimonial injustice. Secondary testimonial harm has manifold manifestations in the life of a woman with poorly understood chronic conditions. A woman whose symptoms are dismissed by her medical practitioners as psychosomatic, may experience a similar type of secondary epistemic harm, when her loved ones discredit her account based on the medical practitioner’s decree. As a result of the first epistemic injustice perpetuated by the medical practitioner, her family, friends, and colleagues may start to doubt her credibility. These experiences of epistemic harm may in turn cause her to suffer prolonged self-doubt and a loss of confidence in her abilities. 

As these examples illustrate, women are repeatedly exposed to testimonial injustice in their encounters within the medical system. These experiences of testimonial injustice make it difficult for women to make sense of their illness experiences. Hermeneutical injustice, on the other hand, creates even more significant obstacles. Fricker describes hermeneutical injustice as “the injustice of having some significant area of one’s social experience obscured from collective understanding owing to a structural identity prejudice in the collective hermeneutical resource (8).

Hermeneutical injustice is mainly incurred by the exclusion of some members of society from the processes of knowledge production, which Fricker refers to as hermeneutical marginalization (9). Since these members are not able to contribute to the constitution of the interpretive framework, their experiences become excluded and silenced from the collective understanding. The knowledge that would grow out of the input of the dissonant groups cannot become part of the collective hermeneutical knowledge the said society draws from. Furthermore, such a society would not be able to create concepts, frameworks, analogies, or stories that would help create a shared understanding of the experiences of the dissonant group. Let us look at the historical example of marital rape to better understand how hermeneutical injustice operates. Marital rape has been defined much later than non-marital rape in many countries, both legally and socially. If a woman was brought up with the understanding that she has to provide sexual services to her husband whenever he desires so and does not have the concept of forceful sexual relations as rape, then it would be very hard for this woman to describe what she is experiencing as marital rape. Furthermore, there wouldn’t be any institution she could appeal to.   

In a similar vein, women who are exposed to testimonial injustice are not able to label it as such due to a lack of relevant concepts, and frameworks. In my experience of going from one doctor to another, I experienced a variety of conflicting feelings and thoughts. For example, one part of me believed that something was wrong, yet at the same time, I doubted my own lived experience. The state of having to choose between your embodied experience of not feeling quite right and your medical practitioners’ decree that you are perfectly fine puts one in a weird place. First, being socialized to fully trust the medical authorities, it is not easy for a woman to describe the dismissal of her symptoms as an act of epistemic injustice. Having to live in a body that does not seem to function quite right, she cannot dismiss her lived experience, either. Despite desperately wanting to choose one of these explanations, you end up being stuck in the middle. By rendering one’s embodied experiences unreliable in this way, testimonial injustice radically disrupts one’s connection to their lived world. As such, this testimonial injustice also instigates a series of phenomenological harms. Doubting one’s lived experience of illness, compounded with the suspicion from the most closed ones who are supposed to provide comfort and support in a difficult time, the afflicted experience a deep alienation in their lives. 

Hermeneutical injustice occurs in two distinct ways in the medical context. First, since medicine as an institution does not have the concepts to describe many of women’s health conditions or help women understand their own experiences of illness, women’s experiences get marginalized and are rendered unintelligible. Second, they may not have the vocabulary to name their experience of being silenced and marginalized in these medical encounters. As Kristie Dotson points out, marginalized communities have been creating a myriad of hermeneutical resources to counter the existing gaps in mainstream hermeneutical discourses (10). These resources are rarely taken up and endorsed by dominant hermeneutical discourses, but they create enormous value for the marginalized community in question. The marginalized community of women with poorly understood chronic conditions has also been creating numerous resources to process their experience of silencing and marginalization and to help other women in similar situations. Meghan O’Rourke’s Invisible Kingdom, Abby Norman’s Ask Me About My Uterus, Ilana Jacqueline’s Surviving and Thriving with an Invisible Chronic Illness, Bethany Stahl’s Endometriosis: it’s not in your head, it’s in your pelvis, and Tessa Miller’s What Doesn’t Kill You are only a few examples of these resources. Some of these resources, such as Cynthia Li’s Brave New Medicine, are accounts of medical professionals who became the type of patient they previously dismissed as psychosomatic. These resources show us that there is readily available evidence for medicine to recognize and make sense of such conditions. However, that would require reliance on women’s testimonies. 

Position no. 4, Cortney Herron; Image Credit: Saatchi.

Medical Fallibility and Sexism in Scientific Research

The phenomenon of the diagnostic gap also has illuminating connections to epistemic fallibility (or lack thereof) in medicine. The institution of medicine has never been comfortable with its fallibility. Medical errors and failures are not usually discussed on mainstream avenues. When medical practitioners are not able to recognize an illness, they usually tend to think that the patient is confused or lying about their symptoms, especially when the patient “looks fine” and their blood tests are “normal.” Tying the diagnostic process too closely to blood test results carries the danger of missing conditions that are not detectable by blood work, such as fibromyalgia, endometriosis, CFS, and POTS. In some other conditions, such as Hashimoto’s and Lupus, the physician would need to suspect that particular condition to order the specific blood test that would confirm or rule out a diagnosis. While several of these conditions will lead to increased inflammation markers in later stages, which will show up in regular blood tests, many patients spend months and even years trying to find a physician who will take them seriously enough to inquire further into the reasons for the high inflammation markers. Hence, the acceptance of “normal” blood test results as a necessary and sufficient condition to rule out illness may lead to prematurely concluding clinical inquiry. Most of the time, this process results in the physician’s judgment that the condition is mental or is “all in your head.” 

Such instances demonstrate that medical practitioners seem to operate with the assumption that medicine is an exact science and that we have complete knowledge when it comes to diagnosing and understanding a health condition. Medical training and cultural norms do not seem to encourage or even allow the cultivation of epistemic humility in the practice of medicine. Instead of embracing and dealing with the ambiguity and uncertainty inherent in most medical practices, medicine seems to opt for the illusion of infallibility. 

The assumption of infallibility also perpetuates a vicious cycle in which the set of behaviors that prompts the medical practitioner to dismiss a patient’s symptoms as psychosomatic is also used as supporting evidence for the diagnosis itself. Here is how this catch-22 works: You are sick and feel miserable. You see a doctor who tells you, “it is all in your head.” You want to believe the medical practitioner's expertise, but you continue to experience symptoms, so you see another doctor and then another one. Now you are a patient who satisfies one of the criteria for a psychosomatic diagnosis—having been to too many doctors with the same complaints. In the process, quite naturally, you feel frustrated and doubt the psychogenic explanations provided to you, which do not really provide a respite for your suffering. Now you satisfy another criterion for a psychosomatic diagnosis, that is, “being aggressive towards the health care practitioner and to their diagnosis and advice.”  

While medicine may be inherently fallible due to its being a human endeavor, one could argue that sexist practices in science and medicine make it more fallible due to the gaps they create in our hermeneutical understanding of women’s bodies and experiences. As such, gendered exclusionary practices in scientific and medical research also contribute to the diagnostic gap. It is common knowledge that scientific research has primarily examined male subjects and has a much better understanding of the male body than the female body. The difficulty of adjusting the study to take into account the hormonal cycles that females experience is the justification for excluding female animals from scientific studies (the stereotype of the hormonal woman). 

Up until 2016, when the National Institutes of Health (NIH) adopted a "Sex as a Biological Variable" policy, the study of male animals was the norm. To be eligible for funding, scientists had to incorporate sex differences into their research by using subjects (human or animal) of both sexes. The policy has drawn criticism because some people believed that the female hormonal cycle would produce unreliable data. This concern, according to researcher Rebecca Shansky, is unfounded because hormonal changes also occur in male subjects. However, because researchers have been studying these hormonal dynamics since the beginning of science, they are not viewed as variables but rather as a given.

From relationship advice to scientific research, the sexist idea that women are complex, and men are simple is deeply ingrained in society's institutions and structures, where it is all but taken for granted. Because of this, it is difficult for us to understand conditions that primarily or exclusively affect women using mainstream hermeneutical resources. On top of that, there are hardly any studies on transgender people. Particularly, there is a pressing need to populate studies that consider the various stages of transition.  

The rising number of chronic illnesses, especially after the pandemic, is disconcerting. It is a shame that such power in numbers was needed for the medical community to recognize and take these conditions seriously. However, the global experience of the pandemic and long Covid has been altering our hermeneutical understanding of chronic illness in productive ways. I am grateful for the wider recognition and for being able to tell my story without being exposed to suspicious looks or comments. Because, as O’Rourke writes, “Knowledge brings the hope of treatment or cure. And even if there is no cure, a diagnosis is a form of knowing that allows others to recognize our experience and enables us to tell its story. I felt acutely the absence of a story I could tell others. Without a story, who—or what—would help me get better?” (11). (O’Rourke 2022, 54) 

NOTES 

1. Rachel Saunders-Pulman et al., 2011 “Diagnosis and referral delay in women with Parkinson's disease” Gend Med. 2011 June, 8(3):209-17. doi: 10.1016/j.genm.2011.05.002. PMID: 21664587; PMCID: PMC3966522; Anna Sanigorska et al. “The lived experience of women with a bleeding disorder: A systematic review.” Res Pract Thromb Haemost. 2022 Feb 3; 6(1):e12652. doi: 10.1002/rth2.12652. PMID: 35141459; PMCID: PMC8813663.

2. Iris Marion Young, Justice and the Politics of Difference (2011), Princeton University Press. p. 41.

3. Shannon Sullivan, The Physiology of Racist and Sexist Oppression (2015), Oxford University Press. p. 105.

4. Miranda Fricker, Epistemic Injustice: Power and the Ethics of Knowing (2007), Oxford University Press. p. 1.

5. Fricker, Epistemic Injustice, p. 44.

6. Fricker, Epistemic Injustice, p. 44.

7. Fricker, Epistemic Injustice, p. 47.

8. Fricker, Epistemic Injustice, p. 155.

9. Fricker, Epistemic Injustice, p. 152.

10. Kristie Dotson, 2011. “Tracking epistemic violence, tracking practices of silencing” Hypatia, 26 (2):236-57.

11. Meghan O’Rourke, The Invisible Kingdom: Reimagining Chronic Illness (2022), New York: Riverhead Books, p. 54.